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How will onco know

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User
Posted 08 Mar 2018 at 15:29

I am due to see my onco in April, it will be 12 months since I last saw him or had a psa check. I had 37 sessions of RT and in April I will have been on Hormone injections for 2 years

 

How will my onco know how I am? and what will he base his decisions on for future treatment, if any, on?

 

 

User
Posted 08 Mar 2018 at 16:37
Hi Barry,

From my own experience of having the same treatments as you, I saw the Oncologist 6 monthly after completing the RT whilst still having HT. When I stopped the HT she changed the appointments to 3 monthly for a while to see what was happening with my PSA and general well being. As the PSA remained low I’m now back on 6 monthly appointments. She did say to contact the nurse specialist at the hospital if I felt there were any issues I needed to discuss or seek reassurance about.

I don’t know if the timescales are typical for other hospitals

Arthur

User
Posted 08 Mar 2018 at 17:52

Barry

First PSA test post RT is usually after 3- 6 months. Onco may have asked your GP to monitor you, did you check? .

You need to have a PSA test tested at the hospital your onco is based. Circa 1-2 weeks, to allow time for admin to process result, before you see the Onco. That result and how you feel will allow the onco to make an informed decision on the way forward.

Ray

User
Posted 09 Mar 2018 at 09:57

Okay - it seems you have not had the greatest care so far.

Best thing to do I think is to phone GP practice and make an appointment for a PSA test. It should take a week to get the result - you could go to the GP practice and ask them to print it off for you to take to the appointment with the oncologist. The oncologist should be able to see your result on the computer but you will have a paper copy just in case.

Looking to the future, I think you should put a note on your calendar to book a PSA test at the GP practice every 3 or 6 months - they can't say no because the NICE guidelines say you should have regular monitoring.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 08 Mar 2018 at 16:37
Hi Barry,

From my own experience of having the same treatments as you, I saw the Oncologist 6 monthly after completing the RT whilst still having HT. When I stopped the HT she changed the appointments to 3 monthly for a while to see what was happening with my PSA and general well being. As the PSA remained low I’m now back on 6 monthly appointments. She did say to contact the nurse specialist at the hospital if I felt there were any issues I needed to discuss or seek reassurance about.

I don’t know if the timescales are typical for other hospitals

Arthur

User
Posted 08 Mar 2018 at 17:51

Oh my!!! Why are you only having annual PSA test??? If you were my brother, uncle or whatever, you would have been at the GP practice every three months!

As it happens, your PSA should continue to fall for up to 18 months after the RT as the radiation continues to kill the cancer cells for that long. While-ever you are on HT, your PSA should stay low and stable and as Arthur has said, your onco would be concerned a) if your PSA begins to rise while you are on HT or b) if it rises over 2.0 after the HT is finished. Apart from that s/he will base their assessment on how you feel and any symptoms you experience.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Mar 2018 at 17:52

Barry

First PSA test post RT is usually after 3- 6 months. Onco may have asked your GP to monitor you, did you check? .

You need to have a PSA test tested at the hospital your onco is based. Circa 1-2 weeks, to allow time for admin to process result, before you see the Onco. That result and how you feel will allow the onco to make an informed decision on the way forward.

Ray

User
Posted 09 Mar 2018 at 09:12

Hi Lyn

 

 Thanks for your reply ...... I am afraid I am old school (75 years old in 6 weeks) so tend to do as I am told consequently I do not know why I have not been having PSA tests, in fact I have not been told to have one before I see my onco in next month. I finished my RT in September 2016 and had a PSA test the following December, but unfortunately the hospital lost the results and it had to be repeated, incidentally at that time the hospital notes did not indicate that I had already had RT and the doctor I saw said it was time I went for RT treatment

 

My GP's involvement, apart from the practice nurse giving me my HT injections is zero ...... in fact it is worse than zero I had a voluntary PSA test 6 years ago which was 7.9. My GP did not inform me of this at the time instead it transpires that they marked my records as "patient informed and decided to take no further action" This has now been changed.

 

My local football club, in conjunction with my local hospital, ran a screening day in March 2016 which, for no specific reason other than it seemed a good idea I attended. It was that screening that picked up my problem.

 

Regards

 

Barry

User
Posted 09 Mar 2018 at 09:57

Okay - it seems you have not had the greatest care so far.

Best thing to do I think is to phone GP practice and make an appointment for a PSA test. It should take a week to get the result - you could go to the GP practice and ask them to print it off for you to take to the appointment with the oncologist. The oncologist should be able to see your result on the computer but you will have a paper copy just in case.

Looking to the future, I think you should put a note on your calendar to book a PSA test at the GP practice every 3 or 6 months - they can't say no because the NICE guidelines say you should have regular monitoring.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Mar 2018 at 19:53

Hi Lyn

Thanks for your reply ...... I have now e-mailed my onco asking if I need a PSA test prior to our meeting and received a response confirming that I do and promising to send me the required form.

\how are people supposed to know this?

I would thank this community and Lyn in particular for making me aware of this

Regards

Barry

 

 

 

 

 

 
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